Xeljanz (Tofacitinib Citrate): My experience on the trial

I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.

I thought it would be nice for everyone if I documented my progress on here. 

Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.

The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results. 

I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.

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AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

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Replies to This Discussion

Permalink Reply by kimberj on June 20, 2015 at 1:42am

It looks amazing!!!! Mine is coming in nicely too. I'll post updated pics this weekend.

Permalink Reply by sadele on June 20, 2015 at 12:11pm

Looks Great!

How long have you been AU? Are your brows and lashes filled in?

Permalink Reply by AlopeciaDestroyedMyLife on June 22, 2015 at 7:15am

Thanks, I was AU for 10 years .  Yes I have about 98% of my brows back and 100% of my lashes!

Permalink Reply by Giusep on June 22, 2015 at 7:02pm
Wow Owen that is amazing I am so happy for you!!! Your results are so encouraging. my fiancé is also having great success with xeljanz. I will post a pic soon.
Permalink Reply by Manman on June 23, 2015 at 1:48pm

Do you know which site had the $1800 coupon?

Permalink Reply by Football fan on June 24, 2015 at 12:13am
I would also like to know what coupon gives you such a good discount and what pharmacy since next month I have to pay out of pocket.
Permalink Reply by AU1989 on June 19, 2015 at 7:45am

Bauer- That's good news.  I saw Dr King last week and start on Xeljanz using the co pay card next week. I've had totalis for 2.5 years and alopecia of various forms for 20 years.  Insurance is an uphill battle but Dr King is very helpful. 

Permalink Reply by Football fan on June 19, 2015 at 11:14am
I was getting discouraged yesterday and then I saw your picture and got hope again!
Permalink Reply by tall blonde 1 on June 19, 2015 at 7:29am
I'm about to start taking xeljanz and this is all helpful stuff, so thanks.
Permalink Reply by Lori on June 23, 2015 at 6:57pm

I'm about to start taking xeljanz also. My dermo wants to start me on 5mg a day. I have been nervous about it. I was wondering if your doctor mentioned when he is going to do the next blood test. I read everyone's posts about blood tests that are on the trial. I was wondering if anyone gets the bloodwork done from there doctors frequently?

 

Permalink Reply by sadele on June 24, 2015 at 10:25am
How were you able to get the Xeljanz?
Are you using the co-pay card or just paying for it?
Permalink Reply by Lori on June 25, 2015 at 8:13pm

My dermo wrote a letter to my insurance company because I was denied. They then approved it and I got a co pay card. 

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